Hi all, my consultant has suggested methotrexate as a preventative as my lymphoma was out of the lymphatic system and am at risk of cancer spreading into the Central Nervous System or Brain.  I have been through one of the chemos of methotrexate which I feel is quite a brutal treatment being on a drip of fluids 24/7, measuring urine input and output and Sodium Bicarbonate tablets.  Can anyone tell me if they have had one or two of these preventative treatments please ? 

  • I did not have Methotrexate because I was going straight onto have my Allo Stem Cell Transplant so ALL the areas in my body would be cleared out of cancer cells using some very strong chemo to make space for the donor Stem Cells that would populate my empty Bone Marrow and grown my all new immune system.

    The process of being on IVs like this was me for 120 hrs for each of my six cycles of savage chemo leading up to my 2 SCTs…… so yes it is very hard work and we were also measuring all of fluid intake and output over these 750+ hrs

    During my SCTs which had me in hospital for 28/29 days for each we were recording both my fluid and food intake and output……Rolling eyes

    There are a number who have had Methotrexate so let’s see if they are looking in.

    What we need to do to get this done ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi again, Debbie.  Well done on getting though the first high dose MTX cycle - it really is a pretty brutal, as you say.

    I had 2 cycles of it (plus 3 cycles of it via intrathecal). I found the second cycle a bit easier, partly because I knew what to expect but also because I really up'd the amount that I was drinking, which cleared it faster and allowed me to get out a day sooner.

    Good luck with cycle 2!

  • Hello Debbie

    I had 2 methotrexate by 24 hour drip and 3 intrathecal. my cancer was also out of my lymphatic system.

    My first drip was longer than my second one. 7 days for first, 6 days for second. The second one you're more prepared for aswell.

    Congratulations getting though it. They should have already told you if you're getting a second one, but I know things happen fast and you'd likely have a lot on your mind. I'd get that confirmed so you can plan ahead a little.

  • Thank you MrV seeing Nurse on Friday but apparently down for 2!!

  • Thank you aeolai tethered to the drip that is pumping fluid into you 24/7 , measuring input and output and OMG those sodium bicarbonate capsules x24 a day and then you swell ….. nasty treatment but could save my life so should not complain too much. I went in on the Monday to start hydration and was out on the Friday. 

  • I was given the sodium bicarb via IV, they just added it into the fluid bag. So, I wasn't given all the capsules that you were.  It might be worth asking if that's an option at your hospital? I did have to take calcium foliate as tablets though.

  • I had the two inpatient rounds of high dose methotrexate.  It was pretty awful but it's your one chance to blitz any undetected cells in the CNS.

    I developed hand and foot syndrome from intrathecal methotrexate, which made me apprehensive about the high dose methotrexate, but I only experienced the usual side effects, nasty though they were.

  • Thank you for your response. I’ve decided to go ahead for the reasons you’ve stated actually. How are you now 

  • I've been in remission for two years now, so my lymphoma treatment has been extremely effective so far.

  • That’s fantastic news!